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Brain injury is more common than many would imagine, yet as a condition it remains largely hidden because many sufferers do not acknowledge their own condition and statutory services fail to recognise it. Yet a brain injury can occur in seconds, and have consequences that will last for the rest of someone's life.

Acquired brain injury (ABI) includes both traumatic brain injury, such as in accidents and assaults, and non-traumatic injuries caused by drug overdoses, brain haemorrhages, tumours and so on. Unfortunately, although medical advances allow many people to survive a brain injury, services have not evolved to work together to enable them to make the most of their rehabilitation potential.

So what numbers of people are we talking about? Statistics indicate there are more than 180,000 moderate to severe traumatic brain injuries annually in Britain,¹ with head injury being the most common cause of death and disability among children and young people. Local statistics compiled during one year in Brighton, Hove and East Sussex for moderate to severe ABI adults (all causes), indicate at least 193 cases, with head injury being outnumbered two to one by non-traumatic brain injuries.² Extrapolating these statistics nationally gives a total figure of at least 500,000 new ABI cases among adults each year, so brain injury is indeed more common than we think.

Many of the new victims of ABI each year require a range of service inputs, across disciplines and professions, from acute hospital admissions to community reintegration and beyond. This will typically span many years, and brain injured people are therefore disproportionately resource-intensive in relation to their numbers. But there is good evidence to suggest that targeted early intervention leads to a massive improvement in subsequent quality of life and an equally massive saving in overall social cost. This is a client group suited to the development of new ways of integrated, inter-disciplinary working between health and social services. Such an approach would produce far higher quality outcomes for service users as well as substantial financial benefits.

Given this, it is unfortunate that "patchy" would be a generous description of current services. Despite several major reports recommending integrated services for people with brain injuries (including a 1995 Social Services Inspectorate report³ and the 2001 House of Commons Health Select Committee Report¹), in most parts of the country neither the NHS nor social services offer any special arrangements.

Indeed, as the SSI pointed out, in most areas ABI is not recognised as a separate entity at all, and people with brain injuries are talked into either physical disabilities or mental health caseloads. In general terms, they receive a good service in neither - their needs are substantially different from those of either client group.

My own move into brain injury work came about when, as a social worker in an outer London physical disabilities team, I realised the most difficult third of my caseload comprised people with different forms of brain injury. The difficulties resulted from the fact that none of the statutory agencies was prepared to provide services for them. I discovered that no one in health or social services knew much about brain injury, nor wanted to know.

My experience in the mid-1990s is still typical for many social workers now. Some areas have, however, begun to address the problem. The Northumberland Head Injury Service has been running 10 years, and Nottingham, Aylesbury, Lincolnshire, Suffolk, and the Medway area of Kent are all developing broadly similar services. Some include social workers, others do not; some are clinically led, others are not.

Generally, the non-medical model is found to be more effective in a community setting. The case management principle is often used, and this seems to provide the best continuity and seamlessness for clients and their families. What is also remarkable is how cheap these services are to run - a budget of £300,000 a year is typical - and this is often achieved by the creative use of existing posts.

However, it seems the current fragmented service response, where individual social services departments and primary care trusts have been left to make up their own minds on ABI, is not destined to remain this way.

Work has begun on a new National Service Framework (NSF) for long-term conditions which will have as its main focus ABI and neurological conditions. It is likely that this NSF will make its recommendations by 2004-5.

I would anticipate that subsequent NSF good practice guidelines will look to a general levelling up of service response across the country and will ensure an integrated approach (involving health, social services and the voluntary and private sectors) and the continuing involvement of service users and their families.

The current NSF working groups have significant involvement from, among others, the Brain Injury Social Work Group. BISWG is a small, but determined, self-selected group of social work practitioners, who have come together, since the start of the 1990s, to try to overcome their frustrations with unresponsive services and management structures.

However, BISWG has now affiliated with the British Association of Social Workers as a special interest group, is organising a range of educational conferences and events around the country, and is liaising with the training sections of local authority social services departments.

The future for people with brain injuries and their families, and for the social workers who work with them, is beginning to look a lot brighter. But much remains to be done.

Making headway: Recommendations for improving ABI services

• Data collection and a national ABI register: National and local information about people who suffer ABI is essential for rational service planning. Ideally, the Department of Health should co-ordinate this process and it should feed into the recommendations of the NSF for long-term care. 
• Care pathways and protocols: Models of care need to be mapped out, starting at A&E departments, through the rehab process, and continuing back into community reintegration. This will clarify who is responsible for doing what, when and how. 
• Equitable service provision: Service provision for people with ABI is totally fragmented and subject to the usual postcode lottery. Minimum standards of treatment, care and expectation need to be established nationally. The NSF should assist in this regard. 
• Continuing care criteria: Rehabilitation is often funded at specialist units outside the NHS by NHS Continuing Care money. The criteria need to be fair and equitable wherever the ABI person lives. There also need to be agreements between health and social services so that it is clear which elements of care are to be funded by which service. 
• Commissioning of services: Both health and social services must clarify at local level how their respective commissioners will engage in the commissioning and development of ABI services. This needs to be nationally monitored by the Department of Health. Again, NSF recommendations are likely to assist this process. With regard to social services in particular, the development of community rehabilitation services (in conjunction with PCTs) and specialist ABI community teams needs to be examined. The areas of the country where these services have been developed offer many useful models (and warnings).  
• Respite care: People with ABI and their families are likely to need regular breaks from each other, once the client is living back in the community. Rehabilitation is becoming more common, but there are still far too few specialist ABI respite care providers. 
• Training: Health and social services staff, at all points along the care pathway, need special training in ABI and its consequences. Many of the leaflets and books produced by Headway are useful in this regard, but far more are needed. Local authority training departments need to design courses for those social workers who will work with ABI cases. Contact with the Brain Injury Social Work Group is recommended.   

Case study 1: 'He denied anything was wrong' 

Steve (not his real name), aged 28. Out for a drink with friends, is beaten up by three men. He is found to have temporal damage and a skull fracture. After a period of semi-consciousness and sleep, Steve becomes active, claims he is being held prisoner and must go home. He denies anything is wrong and becomes aggressive. Ward staff ask for a mental health assessment, but this then indicates he does not have a mental illness. Steve insists on being discharged. His hospital consultant agrees because Steve is difficult and his bed is needed. He is taken home by his mother and partner. 

Steve is not referred to community rehab services (just for strokes) or social or mental health services. His partner, who has a young child, and his mother have to cope. Steve is impulsive, aggressive, uninhibited sexually, spends money freely, collapses in the pub after three pints. He is tired and spends days in bed, but cannot sleep at night. 

After three months, the local social services vulnerable adult team becomes involved. But Steve's partner is very stressed, saying this is not the man she lived with before, and is worried for their daughter.   

Case study 2: 'No rehab potential' 

Derek (not his real name), aged 48. Experiences a metabolic brain injury following a deliberate insulin overdose. He remains in a coma for seven weeks, then starts to "wake up" but has no apparent awareness of where or who he is. He has no speech but is increasingly mobile, making him a major management problem for the ward. The local NHS rehab unit turns him down on the basis that he has "no rehab potential". Consultant and ward unable to discharge him back to elderly parents who visit but have no real insight into what has happened to their son. Derek ends up "bed blocking".  Hospital social services and the local primary care trust become involved, and Derek is referred to a specialist assessment and rehabilitation unit for severely neurologically damaged people. The unit is 90 miles away, and will take him, but will charge £3,150 a week. The PCT baulks at the cost, negotiates, looks at alternatives, is unable to find anything else, and three months later agrees to fund his place. Derek waits eight weeks until the unit has a bed for him.   

Mike Hope was formerly ABI co-ordinator for East Sussex Brighton and Hove and this report was prepared for this authority. He is now advising on brain injury for the Raphael Medical Centre. Contact him at RaphaelMC@freeuk.com or on 01732 833924

References  

1 House of Commons Health Select Committee Third Report, Head Injury: Rehabilitation, HMSO, 2001 

2 M Hope, Report and Recommendations for Development and Commissioning of Services for Acquired Brain Injury, Sussex Acquired Brain Injury Forum, 2002, www.sabif.info/mhopereport.htm 

3 Social Services Inspectorate, A Hidden Disability: Report of the SSI Traumatic Brain Injury Rehabilitation Project, SSI/DoH, 1995  l Websites  Brain Injury Social Work Group www.biswg.co.uk, or www.basw.co.uk